By Rebecca Melançon
Photography by Barton Wilder Custom Images

This is the story of life, death, and the passage from one to the other. For surely death is as much a part of life as birth. For a collective community of man, life follows a circular path with no beginning and no end, but rather a continuance of the species. For most, however, the individual view of this circular path is quite linear, with a beginning, a middle and an end. I have shared the view of the end with another and this is our story.

The beginning of the end of my mother's passage occurred in the middle of the night. I heard a loud thud, then another. I arose to investigate what was surely more than feline scampers in the dark. The noise led me to the bedroom at the end of the hall. Pushing the door open, I found a surreal scene with books strewn across the room, a small table overturned, bed linens on the floor, and my seventy-three-year-old mother hiding under the antique bed and moaning for her long-departed father to help her.

The universe as I knew it had tilted and we entered a different world where roles were reversed. I was now parent to the woman who had once parented me. I spent the next two days listening to a lost mind. There were delusional ramblings, discussions of imaginary people in the hall at night, visions, and confusion about where she was. She later dismissed this two-day odyssey as one night's bad dream.

It was through those two days of mom's complete disorientation that our path entered the dark of the woods. It was then that I knew I needed a guide, because I had not been here before. It was then that I called Hospice Austin.

Our journey actually began three years before. My mom had moved from her beloved New Orleans and into our house in Austin with a prognosis of sixty to ninety days to live. I was to be her caretaker for this last part of her life. That she lived another three years helps to explain why most doctors are hesitant to predict how much time we have left on earth. Of all the doctors seen before and after the move, there was only one who would venture such a prediction. Clearly he was wrong.

I viewed this, our final time under one roof, as the last opportunity to bond with a mother I had never been close to. Although it would be a time for fulfilling the duty of an only child to assist a parent on this final journey, more than anything I hoped for a reconciliation and the approval I had always sought.

Shirley Barentine Melançon was an alcoholic in the true Southern tradition…imported liquor and homegrown denial. To her friends she was the life of the party. I'm not sure whether they didn't know the truth about her or they were all Southern traditionalists as well-the sisterhood of the almost fully functioning belles. I know they never saw my mother's dark side. By dark side I don't mean abusive or mean. Quite the contrary, when mom was drinking she was particularly nice, overly sentimental and overly attentive. When she wasn't drinking, I was met with cold indifference-or worse, yet another illumination of yet another flaw she perceived in me.

My telephone call to Hospice Austin felt more like a primal howl for help than an organized plan set in motion. They descended upon me like a warm blanket in the cold. These aren't just nurses and social workers and chaplains and volunteers, but a well-honed team of guides to life's final destination.

The nurse arrived first, to complete an assessment of the physical situation. She examined my mother and reassured me that mom's condition could be improved. The social worker arrived to review all our paperwork to ensure it legally expressed our wishes. I thought we were in good shape, only to find out that I needed a separate "Do Not Resuscitate" order for the ambulance, should one be called. "It needs her doctor's signature," the social worker explained. My mind registered this as one more thing to handle, one more task to complete. "No problem, we'll take care of it," she said.

Among the thousand things I was juggling came the thought, "How am I going to pay for all this?" I was shocked and thrilled to find out that, in our case, Medicare pays for one hundred percent of Hospice Austin's care.

Within two hours of the nurse's departure, a delivery driver arrived with a bag of prescriptions and instructions to support what the nurse had already told me. Then someone called to ask if I needed anything else or had any questions. Only one, I said: "Who are you, really? Do saints make house calls?"

For those who choose to die with dignity, to ease out of life with as much grace as possible, hospice care is the element that makes it possible. Mom's choice to die at home set the tone for the multitude of choices to follow. My job was to fulfill her wishes to the best of my ability.

My mother grew up in relative luxury with servants to turn down her bed at night and serve her breakfast in bed. She was never responsible for anything; there was always someone else to pick up the pieces, the mess, the life. She was intelligent, talented, attractive, and creative. Yet she never worked a day in her life, did no volunteer work of any kind, and created nothing but her own comfort. I suppose all this would be acceptable if she had been happy, but happiness eluded her through the end of her life. Whatever she had was never enough and, worse, she had the misfortune to outlive the supply of money that made her extravagance possible.

Over the eleven months that Hospice Austin was involved in caring for mother, our lives became focused on making her exit as comfortable as possible. There were good days and bad days. Sometimes she hardly seemed sick, much less dying. Sometimes I thought we were entering her last night-only to find her up the next morning, fixing her breakfast. Dying is not a tidy process.

While Hospice Austin provides an amazing array of crucial services, their system envisions having a primary caregiver in the home, although that is not always possible. Without the caregiver, Hospice Austin would provide services elsewhere, for example in a nursing home, or through an extended stay at Christopher House, an inpatient facility with the feeling of home that provides the medical care of a hospital. When there is a primary caregiver at home, supporting the caregiver is a crucial element of Hospice Austin's service. Providing a caregiver the option to pick up the phone, twenty-four hours a day, and talk to someone about what's happening is of vital importance. I found that whether the immediate needs were physical, mental or emotional, a knowledgeable voice was near. I greatly appreciated the handholding and counseling on what to expect next, as the path isn't quite as frightening when you know what's ahead. I know this helped mom, too, although she was to travel where none of us had been and no one could describe it for her.

I was fortunate to be surrounded by a loving and supportive family including a mate, several adult children, and a few close friends (who more than once helped by kidnapping me for Margaritas). I cannot imagine traveling this path alone, although I know many do. While I was the primary caregiver to my mother, there were many wonderful folks who kept me nurtured enough to continue. My kids came occasionally to clean the house, mow our yard and generally do whatever I needed. My mate did everything he could to ease my load and loved me through it all.

Looking back I see what a gift it was for us as a family to travel this hard journey together. My children showed a side I had not seen before-that of caregiver themselves. There were days when all I wanted was to be surrounded by my family. From the youngest grandchild to the oldest child, they always answered my call for the comfort of closeness.

While I needed the help of my adult children, I also seemed to need something from my six-year-old granddaughter. Rather than being someone else to take care of, she represented the next generation and the hope that signifies. Her radiance glowed like a new light on the path, and the life cycle seemed natural and complete. The presence of a child brought an unexpected balance to the world, and even in the shadow of death, all seemed right.

My mother did not shepherd her parents through the end of life, and I did not bear witness to their deaths. With fewer medical facilities and far less medical technology, the passing of life is something that previous generations were much more intimately involved in. Most people died at home surrounded by generations of loved ones. Now death often occurs in a clinical setting, and something has been lost. While it is true that mom needed us, I feel as though she gave us a great gift in allowing all of us to be part of her passage and we, as a family, are stronger for it.

The challenges of running a small business are sufficient for any individual or couple. The addition of a seventy-three-year-old spoiled child is almost unbearable. The child who entered adulthood sheltered by the family money of the doctor who owned the town hospital was now living with me and expecting the same life conditions (read services) to continue. Mom had always been taken care of, first by a father and then by a husband. Her indifference to me bred an independent adult fully capable of managing life, family and business. Regarding each other, we both asked the same question: "Why, oh why, can't she be more like me?" Under the circumstances, however, that became irrelevant and, in the name of the dying mother, I became maid and servant.

I can comfortably describe my mother as spiritual but not religious. When a chaplain from Hospice Austin called mom wanting to visit, she was rebuked. Mom had not allowed religion into her life thus far (nor have I, for that matter) and didn't want it involved in her last days. My only regret is that mom didn't let the chaplain in sooner, because when she did it completed a circle of care. More than anyone else, the woman who came to our door and into our lives helped direct our path. She brought understanding of the journey, of the process, of the boundaries. And she gave mom something she desperately needed: friendship.

At one point I had difficulty with the boundaries. I was willing to do anything for my mother but our relationship had taken a difficult turn. She had always been condescending to me. I wasn't the daughter she wanted and she wasn't the mother I wanted. We had long ago come to terms with our expectations. But the situation deteriorated further as her health failed. Her verbal abuse took on a frequency and an edge that made caretaking much more difficult. By this time, the Hospice Austin chaplain had been visiting mom weekly for four months. I called on her for assistance and received much more than the helping hand I sought. I met with her and voiced my opinion that mother, despite her advanced age, had the disposition of an immature child, a conclusion that the chaplain confirmed. From my encounter with a sage of the death path, I walked away with permission to set limits.

For most of the three years mom lived with us she had needed little assistance. I helped lift things, unscrewed jar lids, and carried groceries. It was only in the last three months of her life that her physical care became more demanding, due to her weakened state.

The physical care was actually somewhat of a relief. It was so much easier than the emotional game we had been playing for most our adult lives. Now she was too weak to push my buttons and I was grateful for that. I had left home at eighteen to be free of her. I had discarded the life designed for me and left it behind like a misfitting skin. I had long ago gone into the world and created my own life and had returned home only for infrequent visits lasting no more than three days. My illusion that she had shed her expectations was shattered when she moved back into my life twenty-eight years later, bringing the baggage I had thought was lost forever.

One of the most defining and valuable traits of Hospice Austin is its mission to help terminally ill people die in as much comfort as possible, not force life or prolong death. It sounds simple but it is profoundly different from the general medical community, whose mission is to cure. The care given to the dying by Hospice Austin staff and volunteers is remarkable. Their philosophy of controlling the symptoms to provide comfort without concern for long-term effects is ideal. So many symptoms that I would have thought were unavoidable due to mom's age and illness were banished with the correct medication. The goal is to achieve a more even path rather than the roller coaster of out-of-control symptoms. From shaking hands to disrupted sleep patterns, all were kept in check to provide a better quality of life.

Beyond caring for physical symptoms, every staff member and volunteer also offered companionship. I was sympathetic to the fact that mom had been ripped from her home and friends and deposited into a new situation that lasted far longer than she ever expected. Her lifelong friends were five hundred miles away and this wasn't the time in life to go out and create a new social circle. It may seem far removed from her physical care, but the extra attention paid and the half-hour conversations by Hospice Austin workers enhanced her quality of life as much as the medication.

One of my greatest difficulties was to accept help. At first I didn't want to burden anyone else with what I saw as my responsibility. Our Hospice Austin nurse convinced me that as the journey continued, I would need all the help I could get. The medical assistance was easy to accept because I don't possess those skills, but opening my home and life to Hospice Austin volunteers was difficult. These were people like me, with jobs and families; how could I possibly accept help from them for something I could do? If only there were forty hours in every day, I could do it all. Looking back, I don't know why, but I felt like I had failed mother if someone else fixed her a cup of tea or brought her a dinner she particularly enjoyed. Yet the volunteers who gave her massages and cooked crab au gratin for her took me into their arms as well, and nurtured me, too.

Of all the services, kindnesses and directions we received from Hospice Austin, the understanding and comfort it brought were paramount. The emotional support provided by people who had gone through this before, who knew far more about this path than I did, gave both mother and me strength and endurance. Every individual I came in contact with gave me a shoulder to cry on, a laugh when I needed one, illumination when it was darkest.

Some people choose to cling to life by exercising every medical opportunity but I know mom abhorred the idea of dying in a hospital, hooked to life-prolonging machines, vitals tended to day and night, poked and prodded until death is the only release-like my father died. He exited life in glaring lights with someone pounding on his chest and needles thrust into his tired heart. Some people take measures to avoid such an end by opting for a quick and early departure at a time of their own choosing. Who is to say that one choice is better than the other?

Suicide was one issue neither mom nor I directly addressed. At times it seemed an unspoken undercurrent, a possibility felt more than acknowledged. I recognized that it was what I might be considering, were I in mother's position. Years before, she had joined the Hemlock Society, a nonprofit organization that promotes choice and dignity at the end of life, and had expressed her intent to end her own life should she be faced with a terminal illness. Although that was before she was diagnosed as terminally ill, I was prepared for her to make that choice. Upon reviewing her medicine chest it became clear that, should she choose to do so, she indeed had the means to kill herself. I would not have stood in her way. I asked myself if I could help her, should she request it. For me, it would be the ultimate act of love, but one that would require more strength and conviction than I might possess. Fortunately, it was a question I never had to answer. She opted to let death take her in due course.

For so many years we had found family harmony in the void of a shallow relationship. How were we to cross the path from life to death together? I could only believe that because she had once crossed the path to life with me, I must complete this journey to death with her. There were many times I wanted to leave her on the path and run back. Whether from fear of where the path led, or the sheer discomfort of being on the same path, I still do not know.

Her condition deteriorated quickly. One week I was fixing her meals and managing general housekeeping. With relative ease, I could fit this into my family and work schedule. The next week I was feeding, changing, medicating, watering, and turning her every twenty minutes and there was no ease at all. I quit all thoughts and activities not essential to the care of my mother or the running of our business. Sometimes she knew I was there, sometimes not. We were assigned a personal care assistant through Hospice Austin who came three times a week and changed the linens, bathed and shampooed mom, and otherwise tended to her personal care. This service may have been designed for hygienic reasons but it seemed a tremendous kindness and eased my burden of care substantially.

I watched through a crack in the door one day as the personal care assistant cared for mom. The young woman was trimming and filing her fingernails with such tenderness. She spoke softly and warmly and I could see mom melt in the warmth of the moment. I found myself jealous of the intimacy that this stranger shared with my own mother, an intimacy I had never been allowed. But I, too, melted to the scene before me and was glad that mom had this moment.

Because tending mother put me in such close proximity to the reality of death, I felt connected to life in a way that I never had before. I was wrestling with the basic questions of what it means to be near the end, and about to depart everything one has known. I attempted to discuss death with my mother, but she was a master at avoidance behavior. All she would say is, "One day I'm here, the next day I'm not. End of conversation." I protested, "That can't be all of it. You are staring into the greatest abyss of mankind-your own mortality. This stage (and I believe it is a stage) is about to end and you don't know what's beyond. What are you thinking about?" To which she would reply, "I'm thinking I would like another glass of wine and I'm not thinking about anything else."

Our society tends not to handle death very well. It's usually physically and emotionally messy. Whether from our own fear or a devout faith in our own immortality, we shun the dead and dying when we should embrace them as an affirmation of life. In my idealistic way of thinking, everyone should be a witness to both birth and death. To be in the presence of either adds depth and meaning to the distance between the two. For now, I continue on the carousel of life with the other riders, both young and old. One day we all must step off the ride. I hope I am escorted off by my loved ones and not jerked from my steady steed by strangers.

Dietary standards don't, and shouldn't, exist when you're on the death path. Free of the concerns of life-prolonging health decisions, one can indulge in all the dietary sins. Mom had never eaten sweets. She simply did not like them. But in the last few months of her life, she became a sugar addict. At night, I would bake big batches of brownies for her only to find them consumed by morning. This turned into a daily ritual of single and then double batches. Finally came the request to supplement the brownies with cookies and cake. We both joked that she had consumed a lifetime of sugar in just a few weeks.

They weren't all bad times. A black sense of humor helps immensely. One day we were standing in the kitchen. Mom was holding some English cream she'd purchased at the height of the Mad Cow Disease epidemic. She looked at me and said, "I don't know if I should eat this now. They say you can carry Mad Cow for years before you get sick." I gazed at her for a moment before she said, "I guess it doesn't matter does it? I'll be dead anyway." We both burst out laughing and she devoured her English cream. There is a certain freedom when death is near-consequences are a thing of the past.

Saturday was a bad day. Mother had grown weaker and weaker and could barely drink from a straw, even if I held the glass. She was slipping and she wasn't going to bounce back from this. I knew death was drawing near. I could feel it in the house. Not anything I could see or touch, more of a sense of its closing in. She had slept for the better part of four days. She seemed comfortable and free of any pain.

I awoke Sunday and, as was my custom, immediately checked on mother. I found her rasping, with one eye rolling back, the other unfocused. Speech had left her. I called Hospice Austin to ask what I should do. As instructed, I made a paste of morphine tablets, rubbed it on her gums to ease her breathing, and gave her oxygen. A nurse was at our door in twenty minutes. I can't imagine getting a call on Sunday morning to go and help a stranger die. I don't know how they do it. The nurse wasn't our regular but the one on call. Yet she wasn't a stranger; she was one more arm of a familiar entity come to embrace us. She conveyed just the right balance of being present but not controlling or choreographing this final dance. She stood to the side but emanated a ray of confidence that spread to us all.

The death rattle is real and I have heard it. The rasping sound vibrated the room. I tried to sooth mother by lightly rubbing her shoulder but she moaned loudly and pulled back. Seeing this, the nurse asked if I had my children by natural childbirth. I answered yes. The nurse said, "Remember the point where nothing in the universe existed but you and process of birth, and any touch was an intrusion? That's where she is. It will pass shortly." I dripped water on mother's lips and tongue to keep them from drying. Her breathing eased and the death rattle subsided. As life left her, I sat on the bed with her. I tried to reassure her by telling her that I was there and it was all right for her to go. Her breathing slowed. She seemed to be taking every other breath, then every third breath. I held my own breath, breathing with her, as if it would help. Until no more breaths came and I could hold mine no longer.

"She'll breathe in one or two more breaths," the nurse whispered. I'm so grateful for that advice, because I would have leapt across the room when mom's last, delayed gasps finally came.

When my father died, I was the one to identify his body. I had never before seen any one I loved dead. When the funeral director pulled back the sheet I was struck by the absence of not just life but spirit. The person who was my father had left. What was before me was a shell. I could only think of the pod people in science-fiction films-it does resemble him, but it's not him. I realized the director was asking for confirmation that this was indeed my father. Without thinking I replied, "No. He's gone." Somewhat alarmed that they might have the wrong body, he moved forward and questioned me again. I gave him the answer he needed, but I knew this wasn't my dad; it was his shell. I wasn't present when father died, but I watched the life leave mother. Whether spirit or soul I do not know, but I do know that what leaves a person who dies is more than electrical impulses and a beating pulse. The transformation is astounding. The person I was familiar with, my mother, was clearly gone. What remained was now a receptacle that resembled her.

It is a powerful thing to watch someone leave this earth. Even when you know death is coming. Even when you've planned for it. The urge to stop it or change its course or simply do something is overwhelming. But the something you must do is to be present, to bear witness. I think mom knew she wasn't alone. I wasn't alone either. Besides my mate, Hospice Austin was there.

It was only after my mother had died and her remains were taken care of that I finally found the closeness to her I had always sought. Not through contact with her, but by going through what remained of the possessions she had spent her life accumulating, then selling off little by little as death moved closer. Had she been alive, going through these things would have been an unthinkable intrusion into her privacy. Even with her gone, there was a sadness in processing her possessions. Inventorying and disposing of these artifacts felt like an invasion into her innermost life. I shouldn't be going through this dresser. I shouldn't be spying in this closet. I shouldn't be pawing through her letters and keepsakes. But it had to be done, and what I discovered was, for me, a shocking intimacy.

I knew that mom had a cache of fine jewelry from past generations as well as her own collection. In the aftermath of her death I was searching for these items. I found a handsomely tailored clothes bag in the back of the closet. Lifting it I discovered it to be heavier than one would have thought. Aha, I thought, the lost jewels! At the top of the bag I could see the color of her mink stole. The bottom of the bag was weighted. I laid it on the bed and unzipped it to reveal her mink and something delicately wrapped in the bottom. The family gathered around to view the hidden contents. There, wrapped in tissue from some of the most expensive stores were five empty liquor bottles-hidden from prying eyes. After a moment of stunned silence we all burst out laughing. The image before us seemed the visual sum of her life. I'd like to think there was more, but this was the life I saw and shared.

The grieving process can take many forms. Despite the fact that mother and I were at odds to the very end, I was prepared to mourn in what I thought was a traditional sense. I was somewhat shocked by my relief and the lightness that followed. I was free. Free from the burden of care that had to be given. Free from the lifelong burden of expectations imposed by another. What followed was anger for the realization that all the standards I had been held to were fantasy concocted by someone who was unhappy with her own life. Next came a sadness, not for the life she led, but for the one she didn't. Then finally the acknowledgement that we each choose our own path from what life presents to us. She was not a victim and neither am I. Like the memory of birth, the memory of the process of death will fade. I will remember the good times and leave the rest behind.

One memory will not fade. The memory of all those who helped us travel this path. To those I am eternally grateful.

Rebecca Melançon is publisher of The Good Life. She especially thanks Deana Cochran, Cathy Young, Camden Frost and Clair Hamilton of the Hospice Austin team of staff and volunteers: I would have never made it without you. You may e-mail Rebecca at hello@goodlifemag.com.